Sunday, February 22, 2015

Seeking to remember.

It might seem there is no good to be found in the struggle and each day there is a new one. 

We wonder when will this end.

How do we get through this moment?

And when we finally see a glimpse of hope? Another door closes...relationships change...a new illness...a new challenge.

It's enough to make you want to scream I give up!

Moments seem dark while we're trying to grasp the hope of God's promises. 

I was asked by a good friend how my day was going. I answered "Can Jesus just come back now?" 

Maybe the Israelites felt the same way towards God during the 40 years in the desert.

Mana and quail...Again? Really God.

God's not here. He's taking to long. Let's cast our own idol. Something we can touch and see. 

I want to see answers now. I want to know it will all work out. I want to know I am following God's will. I want to hold on to hope.

I want to remember...I've been here before. Remember those years after my sister died, my own diagnosis, learning my children will face life long illnesses. I want to remember because no matter how difficult those moments were I survived....and....I survived stronger.

Stronger perseverence.

Stronger hope.

Stronger faith.

So, I have been here before. And I will open my eyes and look for the hope, just as David writes.

I am certain that I will see the Lord’s goodness in the land of the living. Wait for the Lord; be strong and courageous. Wait for the Lord. Psalms 27:13-14 HCSB

Maybe His goodness is seen in the moment we find the physical strength to finish a task, our teens are laughing momentarily together, or maybe watching the rain from our beds while we are ill.

But we only see when we seek and remember.

Be strong.

Be courageous.

Open our eyes to the Lord's goodness.

Wednesday, February 18, 2015

I Enjoy You

Another day of homeschooling...not sure who is getting the most out of the lessons today.

What I thought would be a great discussion became a "lecture". Now, I never knew a lecture was two people discussing a concept or subject. In my mind, a lecture is one person sharing information on their opinions of a concept or subject without discussion. According to our son with Aspergers, if I am speaking it's considered a lecture. 

Looks like I am getting the lesson today...

We have been using The Giver by Lois Lowry for his language arts. As we've been reading and lecturing/discussing each chapter, I've learned how differently our son perceives the world. We are near the end of the book. Jonas, the protagonist, is given the memory of love. In Jonas's society an expression of love would be inappropriate. A better choice is I enjoy you or I am proud of your accomplishments. A more specific description of how you feel about someone.

Here is where my lesson and "lecture" began. I ask a question. How do you describe love? His answer. I don't understand. What do you mean? I try another approach. How do you know we love you? He shrugs his shoulders....My heart breaks a little...I change my approach again. Do you understand if I say I enjoy being with you? Yes, it means you like being with me.

And here is where I probably turn our discussion into a lecture. I want him to understand love. I don't want him to miss understanding the most powerful gift we are love one another. I try to give him a new perspective. If you enjoy watching videos, do you want to do it as much as you can? Do you think about it when you're not? Do you research new videos to watch? Does it make you sad when you don't have screen privileges? Yes.

If you love someone you want to be with them as much as you can. You think about them when they're not with you. You find new ways to make them happy. When you can't be with them you're sad. Do you understand? 

It's 4:30, you said we'd be done at 4:30 and I could watch my video, can I watch my video?

I enjoy you. He smiles and shakes his head. 

I'll take it.

Thursday, February 5, 2015

Like Two Vultures

I'd like to say I am compliant and normally a strict rule follower. Unless we're playing Monopoly....I'm no longer allowed to be the bank because my kids know I cheat. I just can't help it...But in most every thing else I follow the rules.

When I was first diagnosed with Lupus I was warned to stay completely out of the sun, use sunscreen, and wear a hat anytime I leave the house. I did not like that warning and decided, like not taking extra money from the bank in Monopoly, it wasn't a rule that applied to me. 

One of the main cause of early death for Lupus patients now is non-compliance. 25 years ago you were expected to live only 5 years and die from kidney failure, heart disease, or infection. We may not have a cure but treatments have definitely improved our life expectancy.

I was really surprised to hear non-compliance was so rampant among patients. Looking back at my own history, even this past week, I can see non-compliance making an impact on how I feel. I remember being 19 and going to the tanning bed. There was even a form that asked if you had Lupus. I always checked no. What's 15 minutes in a tanning bed going to do to me? There is nothing like a Lupus flare with kidney disease to give you a wake up call. I was no longer worried about being pale, now I worried all my hair would fall out, how to lose the 60 pounds I gained  in 3 months from steroids, or if I'd live to my 20th birthday. Just last week I made a quick trip to the grocery store. No sunblock. No hat. I was in bed by 8 and still did not feel well the next day. may have a thing with non-compliance.

When I was young, even though I had a sister who lost her battle with Lupus after 5 years, I just didn't think I would become that ill. And after that flare from the tanning beds, I thought I would take better care of myself...But it's hard...Really hard to be compliant when you live with an illness every day. 

So now I'm experienced (older) and we have a daughter with Type 1 Diabetes. Both of us fighting a daily battle with illness where non-compliance is a dangerous option. I wonder what kind of example I am setting when I forget to take my meds or just don't want to wear a stupid hat. It's not a good one.

A few months back our daughter's A1c (average blood sugar) was almost 13. 6-7 is a healthy average. It came down to non-compliance. She had everything she needed to keep her average down. But she was tired of doing it day after day. And I understood, but I didn't want to see her suffer. Just like my husband and kids don't want to see me suffer.

It was time for a new plan to help her, encourage her, or as Jim called it we were like two vultures on her, but it made a difference and we have a ways to go but she's in the single digits!

Sunny and I share a lesson in grace and forgiveness. Having health issues is frustrating, overwhelming, and really just plain sucks some days. But it's the life we were called to live and we have to do the best we can. This includes making mistakes, but then giving yourself grace, and forgiveness. Then moving on and allowing it to be a lesson in compliance and perseverance. 

And sometimes you may need a vulture to be after you.